Joy in the Midst

In honor of Breast Cancer Awareness Month … my memories from the day I lost my hair due to chemo.

I woke up that morning, and my scalp hurt. It was a strange, exquisite kind of tenderness, a bit like the feeling when you let down a high ponytail you’ve been wearing all day. As the hair falls, after being tightly pulled in the up direction, you can feel it throb into the follicles.

I reached my hands up and gently pulled on the hair, trying to relieve that bizarre ache, and it came away in my hands. I sat up, and looking at the clump in my hand I felt no emotion at all – – only wonderment at the knowledge that I alone held in that moment: today was the day I would lose my hair.

I didn’t want this to freak out my children. I wanted it to be funny for them, a joke. I wanted them to laugh. So, we went outside. It was a breezy, beautiful spring day. Scan 49I said, “Look what Mommy can do,” as I pulled handfuls of hair out and let the blond strands go on the wind, floating out of the yard, over the fence, down the street. I said, “We can check birds’ nests this summer, and see how many have Mommy’s hair in them.” My two-year-old ran around, giggling. My eight-year-old, quiet and absorbed, was harder to read, but even she couldn’t help but catch some of the hilarity of it. I, too, laughed.

As the day progressed, the pain became intense. When my husband came home that night, I told him I couldn’t bear it and asked him to shave my head. He buzz cut the longer hair off, then used a razor to shave to the skin. The relief was immediate, as the hair was no longer there to irritate the scalp. I went to the bathroom and looked in the mirror and thought, “This is me.”

This is me.

When Life is Unraveling … Tie a Knot

I’ve been sick for about two months, and I’m surrounded by little manifestations of the unraveling of my daily life. Today, taking my kiddo to school, the fuel light in the truck came on for the second time in about three weeks. In my real life, I never let the tank get that low. Our mortgage automatically debited out of our account on Saturday, and that morning I awoke about 6:20 with the horrible, panicky realization that I’d forgotten to make a necessary deposit. I’ve been late on so many bills I’ve lost count. In fact, the dairy left a note in our box saying delivery would stop until I caught up our account, which (shockingly) I hadn’t paid in two months!?! The truth is, life has become such a fight that I’ve quit paying attention to the details.

However, God’s grace has shown through, too. With the truck, I never ran out of gas and the one emergency stop I made to put in about one gallon (yes, I did that – slightly humiliating) happened on the one morning all year that we left the house with enough time to spare. Then the bank – the lovely bank – held my debit as “pending” until I could make the deposit; no fees for non-sufficient funds, no interruption of our automatic withdrawals … nothing. The other bills all got paid in time that no services were interrupted. In fact, there have been no adverse effects from my disorganization at all.

I tend to make light of things, to always accentuate the good. But I want the journaling I do here to be authentic. This is a safe place because, although it’s public, from my perspective I’m just sending my words out into the ether, into this great void. They are caught on the wind, swept away, swallowed, and releasing them in this way is cathartic for me. Yet in spite of this, I know some of my readers and I don’t want people to worry about me. So instead of speaking the truth, I’ve been mostly silent. The truth right now is painful. The truth goes something like this:

Life is hard. I struggle each day to find my joy. I want to be happy, but all I feel is sorrow. I don’t want to get up in the morning. Every day, I hit a point where I feel I can’t keep going, where I feel the tears prick behind my eyes and I fight to hold it together so my family doesn’t see me broken.

Added on to these things is the idea that as a Christian, I shouldn’t be feeling any of this. As a Christian, I should find my joy in Christ regardless of what’s happening in my life. As a Christian, I should claim victory in Jesus. I should be bold and strong because the Lord my God is with me. I should be fearless, at peace. I should be experiencing abundant life. Well …. I’m not — at least not right now.

I’ve experienced two things walking through these weeks of illness. First, my eyes have been opened to the daily battle of those who feel this way every day. My love and compassion for them has grown. My prayers are far more specific. The second is this: sometimes when you are in the midst of hardship, be it grief, despair, depression or something else –  God will give you a gift, a sparkling gem that lights up the darkness. This may be His peace, which passes all understanding. Or it may be the sweet, perfect words of encouragement coming from a friend. Or it may be some snippet of Scripture – words of truth – that pierce your spirit and renew your hope. But sometimes, God allows us to be in darkness. I think of fall bulbs that need both darkness and cold in order to bloom in breathtaking beauty in the spring. I know, with my whole heart, that God will bring me out of these shadows into a place of light. I know, with my whole heart, that God’s promises are true. I have the strength to wait in the darkness.

You see, in darkness, for those who ask, there is always an extremely precious gift available. It is the gift of God’s grace. We have this promise: “Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.” Hebrews 4:16  So that is what I do — I draw near to God through meditation, prayer, and worship; and my prayer becomes, “God, pour out your grace in my life. Wash over me with Your free, unmerited favor. You offer it, and I, through faith in Your Son – receive it.” I am an image-bearer of God. When people look on me, my hope and prayer is that they see the grace of God flowing through my life. In spite of my sadness and struggle, that is what I want others to see. In my life, my strongest desire is that they catch a glimpse of the face of God – love, grace, mercy … redemption.

One Foot in Front of the Other

Before cancer, I never went to the doctor. In the past four months, I’ve been there 10 times plus 3 tests at the hospital because of a coronary issue that has developed, presumably from my cancer treatment. I deserve a frequent-user punch card. But my body, which is betraying me, decided that wasn’t enough. An auto-immune disease I struggle with flared 3 weeks ago. I’ve been in denial, refusing to call my doctor because I’m thoroughly sick of being poked, prodded and medicated. However, this weekend the pain level hit an extreme point and my husband and father “encouraged” me to be wise and let my doctor know.

So today, I called. It felt like such an admission of defeat. I’m trying to keep my chin up, but all I can manage to do is cry. The voice inside my head says, “Quit being such a baby!” but I’m just amazingly beaten down. I’m not in a good place. So, here with you, Dear Reader, I’m going to make a massive effort to find my joy, buck up, and walk the path set before me with grace and dignity.

These things I can be thankful for:

1. I have an amazing husband, family and friends who support me, encourage me, pray for me, love me, help me and gently pat my back in sympathy when all I can do is blubber.

2. Physical suffering has bred within me a fierce compassion for those whose struggle is a daily one and who need my love and prayers. Because of God’s love for me and involvement in my life, my heart has become more tender instead of becoming hardened with bitterness.

3. My children see the effort I’m making to keep up with all my “Mommy Duties” and express genuine caring and concern for me. I’ve been blessed with two tender-hearted, creative, loving daughters.

4. God speaks to me in quiet, simple ways, and because of that I can fully believe that He has a good and loving purpose in this. I am assured that I will get to the other side of this struggle and when I do, it will be amazing. I will have a testimony that will reach down to those who are broken and lift them up.

5. Amidst it all, I can still smile.

Courageous

I haven’t been writing because I’ve been having such a struggle to even stay on my feet lately. I have felt my energy draining away. I’ve been experiencing sudden faintness – like when I climb several stairs, I get so light-headed I have to sit down. There’s nothing quite as frustrating (and exhausting) as knowing something is wrong in your body, and not having any idea what it is. I’ve had seemingly countless needle sticks as the doctor has done test after test. I even joked with my husband that I was developing needle tracks and people were going to suspect that I was using drugs. I had a CT scan and a chest X-ray, but everything was normal. And then finally – my doctor ordered an EKG, and it was abnormal. Now, having an abnormal EKG isn’t really something to celebrate, but at least we had found a clue in this great mystery.

Next came a treadmill stress test, the one and only purpose of which is to detect clogged arteries. Well – my arteries aren’t clogged. In fact, the cardiologist told me I was “fit” which nearly caused me to laugh out loud (see the above comment about having to sit down while climbing stairs). During the test, as he was explaining what to expect, he told me my blood pressure would rise. The diastolic would level out at 90 (which it did) and the systolic would continue to rise throughout the test (which it did, until….). About seven minutes into the test, when I was working really hard – going 3.5 mph at a 14% incline – I nearly fainted. The systolic suddenly dropped 50 points, and the diastolic 30. This was, apparently, unusual. The advice of the cardiologist as I was leaving the hospital was to “get my head down if I felt faint.” Really. That’s what he left me with.

Over the next few days, in talking to my doctor I learned that she had ordered a med study and consulted my oncologist. The suspicion is that my cancer treatment has caused damage to my heart. And so today, I had an echocardiogram (a sonogram of the heart) to look at valves, blood flow, and my heart’s general structure. I have no results, but at least the test is done.

Now, with my cancer, I felt very little fear or worry. As I would approach each new step, I mostly felt … nothing. I don’t know if this was peace, faith or simply ignorant bliss, but that’s how it was. This is different. Yesterday, I was just trying not to think about it, but I felt uneasy. I spent some time trolling facebook and saw a post on my niece’s wall that said, “Josh 1:9 Have not I commanded you? Be strong & of a good courage don’t be afraid don’t be dismayed for the LORD ur God is w/ u wherever u go.” I hate to admit this, but I burst into tears. I mean seriously, I was sobbing. I realized, quite suddenly, how alone I felt in all this. I didn’t feel God with me at all. This was just too much – hadn’t I been through enough already? Where was He? I finally confessed how angry I felt that I couldn’t just be healthy. Why this? Why my heart?

After I’d finished spewing, I ultimately said, “God help me. I need to know you’re with me.”

And then I went about my day. God is God and He speaks in very strange ways at times, and this is what happened. Just after dinner I was putting a load of dress shirts in the laundry. Hanging on a nearby rack was a little craft my youngest daughter had made, a circle of card stock hanging on a string that she could wear like a necklace, and it caught my eye. I have no idea when she made it. I have no idea how long it had been hanging there. I had never looked at it before. But it grabbed my attention in the most bizarre way, so I reached out for it. On one side was her name spelled out in glitter. And on the other it said …

Trust me dear reader, this was God speaking. I felt an immediate, palpable calm settle over me. I knew I was not alone. So, today is not much different than yesterday. I still don’t know what’s going on. I still feel kind of awful. In real terms, nothing has changed, with the exception of one thing.

Today, I am courageous.

Praying Circles

I haven’t been here in, well … forever. At least it feels like it. My summer didn’t shape up quite like I envisioned. Instead of having a super productive summer, I’ve had about four months of almost daily headaches. I’m tired. And it’s hot.

But…

It is a new season. Not literally, you know, but my kiddos are back to school and that is a mile marker in our year. My older daughter decided to go back to her Early College High School for 10th grade, and my younger daughter is homeschooling. And so, although I have many projects I want to do in my home, and in myself, I’m going to spend some time focusing on my health. I feel myself slowing down, like a car running out of gas, so I’m changing some things.

First – I’m seeing a chiropractor a few times a week. This has definitely helped the headaches, but has not yet touched the tiredness.

Second – I’m trying to juice at least once a day. There are many health benefits to fresh juices, but my main goal is to get raw food nutrients every day.

Third – I’ve started, just this week, keeping a food journal. I’m trying (not always succeeding, but trust me, trying) to be very thoughtful about everything I put in my body. I realize that my system is probably toxic – I’ve had cancer with all the ensuing treatments, and still receive medical therapy (in the form of a daily pill). I was reluctant to write down everything I eat because it seemed obsessive, but it has actually been really helpful. I have someone who will be reading it, and that accountability makes me pause and think before I eat anything, always striving for the most nutrition per bite that I can get.

Sometimes I look at really healthy people – physically fit, boundless energy, perfect weight – and being healthy seems like an impossibly hard goal. However, I’m currently reading The Circle Maker, a book about prayer, and I’m daily circling the following promise like the Israelites circled Jericho. Eventually, those heavy walls of fatigue and pain will fall.

“The thief comes only to kill and steal and destroy; I came that they may have life, and have it abundantly.” John 10:10

Echos ~ Scars ~ Tracks in New-fallen Snow

My right shoulder muscles have been abused by the circumstances of life. I had breast cancer on the right side, resulting in the removal of thirteen axillary lymph nodes. This caused scar tissue and tightness under my right arm. Then radiation therapy (don’t gross out here) melted the underside of my skin, causing it to fuse to the bone where it is permanently stuck. This causes some tightness across my chest. Then, I had reconstructive surgery where a large portion of muscle in my back was dissected and tunneled forward under my arm to my chest. In fact, the procedure is called an LD Flap – LD for latissimus dorsi and it’s a flap because the section of muscle is left attached to its blood supply. This means that if you press in the exact right spot on my back, I feel it in front. It also means that when everything comes together wrong and I have pain, it’s a shooting pain across my chest and an agonizing ache around my shoulder blade. It doesn’t happen often, but when it does I can barely function.

This is where I was last night. As my husband massaged the shoulder to try and relieve some of the tension so I could sleep, I reminded him that four years ago I was in the hospital. Four years ago, on July 2nd, I spent six hours on the operating table having a bilateral LD-Flap. We talked briefly about everything that led up to that point, and then everything that has resulted from it, and I found tears pricking my eyes as I said, “Stupid, stupid cancer.” But then I told my husband that it is what it is and there’s no point in feeling sorry for myself, that it serves no purpose. I need to buck up and get over it. But my husband, very gently, said, “LaRae – I don’t think you’re feeling sorry for yourself. I think you’re feeling human.”

We turned out the light and I lay there thinking about those tears. Was it “human” to cry four years after the fact or was there something wrong with me? I thought about my story, the one I didn’t write but was faced with living.

I thought about the fact that I had immediate reconstruction after my mastectomies. I had tissue expanders put in that were meant to gradually stretch the skin, eventually being replaced with silicone implants. As far as I got with that procedure, I remember being very happy with how I looked and how I felt. But then I developed a life-threatening staph infection. By the time I was admitted to the hospital I was feverish, my skin was so sensitive I felt like I was being pricked all over by a million needles, my joints ached, I was nauseated and I couldn’t lift my head off the pillow. I was becoming septic. One expander had become infected and the other was surrounded by fluid that was likely to become infected, so they had to come out. It was only after the fact that my nurse told me I had scared the living daylights out of everyone. But the real blow came when I thought the hard part was behind me. My surgeon informed me that the antibiotic hadn’t really “killed” the staph. The staph had colonized right above my heart and for the rest of my life my immune system would engage in a freakish dance with the bacteria, maintaining a delicate balance of health in my body. But we could do absolutely nothing to disrupt that balance. It meant he wouldn’t reopen the wound. It meant that I couldn’t try expanders again. That ship had sailed. I had done my research beforehand, so I knew my only other options for reconstruction involved cutting muscles in my belly or my back, both of which seemed utterly barbaric. I was devastated.

I thought about the day 14 months later when I finally went in for the LD-Flap, and the ambivalence I felt. I didn’t want the surgery. I was dreading it. But I didn’t want to continue living as I had for the past year, either. The two times I attempted clothes shopping had ended with me crying in the fitting room because nothing fit right. I had an abrasion, a permanent bruise really, from the seatbelt in my car constantly rubbing across my sternum. I had to wear a T-shirt over my swimsuit to go to the pool with my girls because my suit gaped in a shocking fashion. And one time my little one, two years old at the time, walked in on me as I dressed after a shower. Her eyes widened as she caught sight of my scarred chest and she said, “Oh, Mommy. How did that happen?” I had no answer. All I could think is, “How, indeed?”

I thought about waking up in the operating room, with everyone frantically running around, hearing words like “pooling blood” and “venous congestion.” I heard the anesthesiologist ask, “Should I re-intubate her?” as I was jerked around and bandages were ripped off. I grabbed the hand of the O.R. nurse and asked what was wrong. I remember his classic deer-in-the-headlights look as he realized I was awake and talking when they weren’t finished yet.

I thought about that first night in the hospital. The pain was tremendous, and something I learned much later is that I metabolize drugs extremely quickly. This is why with five surgeries requiring general anesthesia, I woke up clear-headed and completely aware while still in the O.R. three times. This hyper-metabolism impacts the way my body responds to narcotic pain meds. So, although I had dilaudid in a pain pump, it was having virtually no effect. My nurse that night was a heavily-muscled, dark-skinned, bald-headed man named Kendall, who looked more like a bouncer than a nurse. He didn’t smile at me one time. But he was God’s angel to me that night. He knew pain and he knew I wasn’t faking it. He gave me six “rescue doses” during the night while he tracked down a physician who would change my orders, ultimately doubling the amount of dilaudid in each dose. When I got that first doubled dose, I felt the blessed, merciful effects as the medicine hit my bloodstream. I smiled at Kendall and said, “It’s finally working.” He told me he’d given me enough medicine to knock a man twice my size flat. He said that people receiving a normal dose of dilaudid hallucinate and try to climb out the window – yet, I wasn’t even slurring my words. All I could do was thank him for advocating for me, then thank God for giving me the bouncer-nurse instead of some shrinking violet who wouldn’t have fought for what I needed.

I thought about coming home, and how I cried multiple times every day for two weeks. I think my husband actually began to worry that I was having some kind of breakdown. The sanitized literature they gave me describing the surgery said, “Most mastectomy patients find deep emotional satisfaction from their reconstruction.” But I felt one emotion and one emotion only ~ regret. The pain was out of this world; I couldn’t lift my arms over my head; I had to sleep propped up; I couldn’t dress myself; I couldn’t wash my hair. I absolutely hated how everything looked. I thought I might never feel like my joyful, even-keeled self again.

But last night I wasn’t crying over any of these things. It took three more surgeries but I did achieve results I can live with. And all these events, difficult though they were, were simply moments in time and they have passed. It’s over. They’re just distant memories. No, my tears were caused by something real that still lives in my heart. It’s like an echo. It’s like a scarred-over wound that still occasionally feels tender and gives pain. It’s like tracks through new-fallen snow – the landscape is marred; it will never be the same. As a Christ-follower, I have had some very well meaning Christians tell me, “Give it all to Jesus. Just lay it at His feet.” But I don’t know how to do this. Seriously, how do I unburden myself when my very being is inextricably tangled up in the whole mess? I don’t know how to give it away. So instead, I seek to trust Him. I look to Him and His Word for strength. I strive to live in my joy. And I keep my perspective.

You see, I could fill an entire page (maybe the back, too) with problems and challenges I still face because of my cancer. Yet, put on a great balance, all these things will never outweigh what is on the other side of the scale. I am alive. Sometimes my days flow easily. And sometimes I struggle to live the life I want to live, to be the mom, wife and friend I think I should be. Some days it’s hard to joyfully face life with these echoes reverberating, sometimes manifesting as physical pain. But each and every day, I am thankful for the opportunity to try.

The Plague

simplicityI’ve been avoiding this blog like the title. But I shouldn’t have been. Since school let out for the summer, we’ve had a lot of unstructured, relaxing, recovering from the stress kind of time. And so I haven’t written because I haven’t “done” anything interesting. I’ve been sorting, sifting, throwing – how boring is that?

Foregoing the writing, however, is a mistake. I think back to the reasons I started writing this blog. The main reason wasn’t so I could “wow” any of my readers. It was so I could have a place to journal my thoughts and feelings as I strive to achieve a life that is more simple and satisfying. So today I’m simply recording some self-analysis.

  • Every day I’m faced with dozens of choices about how to spend my time. If I don’t accomplish what I want to, it’s because of the choices I make.
  • My action item list changes the way I spend my day. Even if it feels silly to write “laundry” on the list each day, writing it actually helps it get done.
  • I’ve perfected the art of avoidance. I can avoid a project I don’t want to do for days – by doing other “good” things that “need to get done.”

Which brings me back to the first thing – every day I’m faced with dozens of choices. Even when I’m faced with challenges (like headache pain which I’ve been struggling with for about 12 weeks) – still I can choose to do something every day which brings me closer to my goals. And so I choose to:

  • keep up my action item list
  • keep eating for my health and getting daily physical exercise
  • start putting my hands on an unwanted, despised project every day – even if it’s only for ten minutes.

And so, dear reader, I start in the right direction yet again. As long as I don’t quit, I won’t fail.